It’s been a strange day. Apparently, an eminent psychologist went on about Autism in some pretty bizarre ways — all the more bizarre, because apparently he helps determine direction for agencies(?)

He repeatedly talks about “autism” like this — see the transcript here. And I couldn’t just sit back and not say anything. Seriously, conflating “autism” with environmental or sensory distress experienced by Autistic people is very mid-20th century. And it’s got to stop.

I’m on a “tear” about how we need to stop referring to environmental/sensory distress experienced by Autistic people as “Autism”. It’s not Autism. It’s the result of external circumstances hobbling us as Autistics.

Take a look at what he says below, and note just how nonsensical his ideas sound, when we consider them in the true light of the Autistic experience. Italic emphasis is mine. For effect.

Ian McClure (IM): The question I am trying to ask here is does it help us when we are trying to work with autistic people in environmental or sensory distress to actually say maybe this person is emotionally stuck at the level of a two year old, just hold that (inaudible) in your head for a bit

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IM: and ok so we are coming back in hopefully, we are coming back to this thing about egocentricity, now what I, I have been wondering about is, if we did think about autistic people in environmental or sensory distress as egocentric in the sense of a toddler and if we do remember this whole phenomenon of regression, emotional regression. That suggests that maybe there would be a process for a n autistic person in environmental or sensory distress, right at the beginning of their life, which was very stressful. Ok so I want you to just sort of entertain that idea in your head. We’ve got somebody that right at the beginning of their life, that something really stressful happened to them that means that they cannot move forwards from that emotional regression stage, from that egocentric phase, and so the question is what could that be? What I am wondering about is, is it possible, that autistic people who end up in environmental or sensory distress, in that first year of life, they are not much different to everybody else? Is that possible? And that what we have got is a situation where something happens in that first year of life which does then change the way that that infant is developing. Maybe environmental or sensory distress in a way is a social coordination disorder there’s something about the way that we coordinate ourselves socially, the cerebellum is doing that. We know that autistic people in environmental or sensory distress often have difficulties with these systems but we don’t really know why. Maybe it goes back again to something to do with maybe two different human species came together and what you’ve got is a genetic mess that isn’t quite right, that something is not quite right.

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IM: So I am wondering about whether we should think about the idea of what I call a kind of internal exponential trauma caused by the sensory and the neurological challenges in the brain of the autistic person in environmental or sensory distress one of the reason I am so keen on this idea is, this idea which I think a lot of us have who work with autistic people in environmental or sensory distress, is that somewhere inside that person is a, dare I say it, normal person and this is the experience of parents, the desperation (inaudible) is I know there’s somebody in there if I could only just get at them and reach them. Now I know that that has been dissed a lot and people say oh you’ve got to move on from that, that’s just emotional, you know, it’s just the emotional (inaudible)

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IM: Maybe we need to go right back to what people like Freud and Bleuler and Kraepelin and have a look again at what they were thinking because what happened in the 1950s was that whole thing got chucked out and DSM and so on and all these other things are just not interested in it. And the way it is going forward now is that the research that is being done by psychiatrists by academic psychiatirsts in places like London and America and stuff like that is very focused on looking for drugs. They are looking for drugs to answer these behavioural differences, and that is what they are doing they’ve got this magic bullet idea, if we can get a drug for that just think how much money we can make. And that’s a big motivator. And I know I am sounding very cynical but I’m afraid, you know, that’s going on.

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IM: Ok so I am just going to summarise, In environmental or sensory distress my experiences as a clinician has been that the thing that is really challenging is this own agenda behaviour, that’s not in anyway minimising all the other stuff, but what it boils down to is time after time you know in the clinic this person is causing havoc because they won’t give up on their agenda. So then I started to think, could that be about egocentricity? And then I started to think, hmm, what about, what about something has gone wrong that has meant that that person has got stuck in the egocentric phase. Does that help us, think about it? what could that be? What could that be? If that was true, what could it be? We’ve got clues, we know that autistic people in environmental or sensory distress are in some way experiencing the world differently and that can be incredibly distressing for them. We don’t know a lot about it but we’ve got some clues and could that be enough as an internal stressor and are we having possibly a traumatic encounter there which is exponential because of the massive development that is taking place in the first year of life.

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Anon (Name to be added if they give permission): My name is (deleted), I am a clinical psychologist and Ive spent most of my working life asking autistic people in environmental or sensory distress what they think and feel, I’m also neurodevelopmentally challenged myself and I really found thinking of myself as a different species and a genetic mess, I’m also a mother of a son who is a genetic mess, if we don’t have autistic people in environmental or sensory distress and people with dyspraxia and dyslexia and adhd in our society then it would be much less rich. The reason that those things were thrown out many many years ago is that they were wring. And to start to move back to things like refrigerator mother and prevention of environmental or sensory distress, I think is not appropriate.

(Lots of applause)

IM: Shall I respond?

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IM: I never said anything about refrigerator mothers and I acknowledge that that was a dangerous area that went, you know, clearly wrong but I think it is great that I have had this response actually, because I think it is important to get a reaction like that and I’m pleased that you have reacted like that. All I am doing here is asking questions, I don’t know the answers to these questions. What I am trying to do is I am trying to make sure that we don’t get stuck in a silo mentality, I want us to keep our eyes open about environmental or sensory distress and I do not mean to cause any offence by saying the things I have said but it’s a free country, last time I checked it’s a free country and we are allowed to say what we think and I am basing this on my experience with my patients over twenty years so you know that is just my experience. I am worried that these people are being traumatised by something that is going on in side their minds, that’s all I’m trying to say to you, so thanks a lot (applause)

So, yeah… If you look at Autism just as something that occurs in the brain, you get these kinds of ideas.

But if you understand Autism as something that shapes your every experience in a physical, mental, emotional, and spiritual way (with an emphasis on the physical which can lead to a ton of distress), that changes it, doesn’t it?

It changes everything.

Which is where I’m hoping the Autism research community goes. Away from the “egocentricity” idea. Away from the “own agenda” concept. Away from the belief that meltdowns are “tantrums” which we choose to leverage to get our own way. “Creating havoc” and all that.

We’re not stuck as toddlers. We’re not egocentric. We’re not having tantrums because we’re so wedded to our own agendas. And above all, we’re DEFINITELY not being traumatised by things inside our own minds. We’re traumatised by people like him.

I admit, my experience is very limited, but in all my interactions with autistic people I have never experienced the described “agenda behaviour ” or “egotistical behaviour”. I have experienced real, live toddlers, but none of my autistic friends behave in this way. This man’s assertion just boggle my mind. How on earth did he achieve such an influential position?!!